The Waldenstrom's Weekly
July 1, 2022
Volume 2, Issue 24
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The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom's Weekly as a free service to WM community members to share WM related news and events. Be sure to click on downloading the photos in our newsletters so you don't miss anything important. For more information, please contact [email protected] or visit our website at www.IWMF.com
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The July 2022 IWMF Torch (issue 23.3)
is Now Online!
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Greetings everyone!
I hope you are doing well and enjoying life, even though we who are immunocompromised are still negotiating our way around avoiding COVID. If nothing else, we’re certainly learning how to live with it and get on with life as it is.
We also learn to live with our WM, and the task gets somewhat easier by being well-informed. The third issue of the IWMF Torch for 2022 is now available, so you can widen your knowledge base about WM and how to deal with it.
In our cover article, Dr. Morie Gertz of Mayo Clinic gives us an overview of cold agglutinin hemolytic anemia and cryoglobulinemia…lots of big words that beg for description and explanation in relation to our WM. These are two relatively rare complications of WM, but important things to at least be aware of.
Also, you’ll enjoy getting to know more about two of our “big names” in support groups, one a Board member and the other a staff member: Lisa Wise and Michelle “Shelly” Postek. They interview each other about the different hats they wear for the IWMF, and you’ll feel like you’ve met them after reading it!
So much more is included in this issue, from caregiving tips to learning how drugs are named; be sure to check it out with this link!
Enjoy your reading!
Shirley Ganse
Editor, IWMF Torch
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WhiMSICAL Investigators Invited to Present WM Patient-Entered Data to the World’s WM Experts at IWWM-11!
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WM patients around the world who contribute their data to the WhiMSICAL registry are making their voices heard! The treatment and quality of life information provided by WM patients, presented at American Society of Hematology conference in 2021, has drawn the attention of world experts, who have invited WhiMSICAL investigators to present at the biggest gathering of international WM clinicians and researchers, the IWWM-11 conference.
Patient-entered data, YOUR data, is making a difference and advancing knowledge! The more patients with up-to-date data in the WhiMSICAL registry from every country there are, the greater the impact and benefit of the data, helping patients and clinicians in making difficult treatment decisions.
Please add your voice to the WhiMSICAL registry by joining and completing, or updating, the questionnaire, especially your treatment (question 9) and quality of life (questions 20 and 21) data. To be able to have your anonymous data included at the IWWM-11 conference, please enter your data by Monday July 25th, 2022.
If you are not yet enrolled, logon to the IWMF WhiMSICAL Registry by registering at CART-Wheel.org HERE and welcome aboard!
If you have enrolled already in the IWMF WhiMSICAL Registry, logon to CART-Wheel HERE. Even just one entry will provide an important update, so we especially urge those of you who have not visited WhiMSICAL for a while to sign in.
For Frequently Asked Questions, click HERE.
Together, we can find answers to important questions in WM
research as we search for a cure.
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Ed Forum Primer Series - Part III |
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Understanding Your Blood and
Bone Marrow Test Results:
Rebroadcast with NEW LIVE Q&A!
Wednesday, July 13th, 2022
1:30PM - 2:30PM U.S. Eastern Daylight Time
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Speaker:
Rafat Abonour, MD
Professor of Medicine, Pathology, and Laboratory Medicine
Indiana University
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Moderator:
Bonnie Beckett, Ph.D.
IWMF Public Policy Liaison
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About the Program:
The third in our Ed Forum Primer Series, this rebroadcast from the 2021 “Understanding Your Blood and Bone Marrow Test Results” session will describe the blood and bone marrow tests used to help diagnose WM, as well as explain and interpret the typical tests used by healthcare providers to monitor the disease status of their WM patients.
After the broadcast, Dr. Abonour will answer questions from the chat box LIVE!
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This is a paid clinical trial advertisement.
The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.
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The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.
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